Choice, Control and Obfuscation – How the Personalisation Dream is Dying

In the bold move towards a transformation in adult social care, it feels from where I sit, that control has completely overtaken any pretence of ‘choice’ in the so-called move towards more idealised ‘person-centred’ care and support planning.

I hope I’ve been clear over the years in which I’ve expressed a remarkably consistent view that I love the idea of people being able to choose the support plan they like from a wide menu of options with ‘professionals’ taking less of a role.  I am a massive fan of direct payments. I want people to have more personalised care and more creative care. Desperately. The options just aren’t there yet for people who lack capacity and that is a terrible disservice and inequity that is being served throughout the care system.

Removing care planning from my role doesn’t concern me – unlike those people on the training courses who bang the drums blindly about how wonderful and bright it looks when we allow people to choice whatever they like to put together packages of care, I don’t want ‘retain control’, I truly don’t believe that I, as a professional ‘know better’,  but likewise I know that with the user group I work with, it is rare that I can just hand someone a support planning tool and a list of potential providers and tell them to ‘get on with it’.

That is as far from reality now as it was 20 years ago in my work. While I can say that everyone I care co-ordinate who has a ‘package of care’ is now officially on a ‘personal budget’ and some even have direct payments, it hasn’t really increased choice or control for any but a couple of those people.

If anyone for a moment wants to ponder the duplicitious nature of those in policy making ivory towers who dribble down policies which they want to couch in ‘soft’ language so they are difficult to challenge, one only has to read a fantastic piece of research conducted and published on The Small Places site.

It is worth reading through the piece in detail. Lucy, the author, made a number of requests to local authorities to ask about how their Resource Allocation Systems (the link between the ‘assessment’ and the ‘cash’ – basically) was calculated.  She seemed to come up against a wall of obfuscation but it’s worth looking at her research in detail.

This reluctance for me, seems to relate to the lack and reduction in spending on care and support – the key ‘missing piece’ as to why a council can ‘reassess’ someone as needing less ‘cash’ than they did last year with a more traditional care package.

My personal experience is that the council I work in (and this is similar to things I’ve heard from people in other councils) probably doesn’t want to share it’s RAS because it’s ashamed of the utter dog’s dinner that it’s made of it. It doesn’t ‘work’. It doesn’t make sense. It is frequently changed. There is more emphasis on physical health needs as opposed to mental health needs and while there can be manual adjustments, some of the figures that are ‘spat out’ just seem nigh on ridiculous (and that works for sometimes calculating care ‘too high’ as much as a figure which is ‘too low’).  It comes down to everything needing to be qualified and fitted onto a spreadsheet when actually the needs of two people who might fill out a self-assessment with the same ‘tick boxes’ might have very different needs in reality – no RAS can account for that. One person might under-score because they are embarrassed by the process and don’t want to admit to being incontinent on an initial visit from a social worker because they haven’t been able to tell anyone other than their GP – another person might be anxious and think they can manage less well than they can. Sometimes and this is what local authorities and health services seem to find hard to account for, you just have to treat people and their needs as individuals rather than the subject of outcome measures, tick box performance indicators or resource allocation systems.

Shouldn’t personalisation be about putting the user at the heart of the system? Every user should have a copy of the RAS and how the figure was determined. Which questions are weighted and which aren’t. Without that, there flow of money and the control rests solely with the local authority.

I’m fully against ‘traditional’ care packages. Having someone anonymous and constantly changing pop in for a 30 min welfare check once a day isn’t about improving the quality, control and choice in someone’s life, it’s about a local authority doing the absolute bare minimum that they can get away with to fulfil their statutory duties of care.

The lack of openness about the ways that the RAS shows the true colours of the reasons for these pushes towards the Eden of ‘Personalisation’.

While I have no doubt that for some people, as I keep saying, those with advocates, family or who are able to voice their own needs clearly, have and will continue to benefit enormously from having direct payments – it’s worth remembering that direct payments have been available and accessible for many years now.

Forcing everyone onto personal budgets has only discriminated against those with carers by reducing the amounts of money they are entitled to through the RAS (that’s my own experience of how our local RAS works) and has discriminated against those who lack capacity by promising all sorts of ‘creative’ ways of exploring third party management of support plans but without providing any real ways of accessing it (this is my current bugbear as I have been requesting assistance with this for months for service users I work with but have been told it is not possible for older adults yet as only those with learning disabilities have budgets large enough to make it cost effective – thereby clearing discriminating on the basis of age and type of disability).

I have changed from a fervent advocate of a system which was supposed to be so much better for everyone to a bitter opponent of a system which favours some kinds of disabilities over others, some kinds of service users over others, some kinds of carers (those who are willing to put a lot more time in to manage and support plan where necessary) than others and all to provide fewer services under the guise of choice.

No wonder Burstow is pushing everyone towards direct payments. He is pushing everyone towards a system which masks the way that payments are determined and discriminates openly against people who lack capacity or who have the ‘wrong’ kind of disability or family support.

Now we know that the local authorities can hide the way they make financial calculations, it becomes much more obvious to see behind the facade of the ‘Wonderful Wizard of Oz’ who promotes choice as the final goal to achieve at all costs.

I feel tricked and betrayed by the implementation of the personalisation agenda and the lack of any of the services around it to tackle directly with the problems at it’s heart.

I was deeply disappointed, for example, that the Mental Health Foundation’s ‘research’ and work with people specifically with dementia only focussed on people who either had capacity or had family.  Their advice talks lovingly of setting up trust funds, appointing brokers – well, that is a fantasy rather than a reality and exists only on paper as a choice. They merely replicated a lot of work which was done when direct payments were rolled out around lack of take up for people with dementia and they hadn’t said anything new (I happened to write my dissertation about the lack of take up of direct payments for older adults so did actually do literature researches at the time..).

Anyway, I’m getting ahead of myself.

For now, I think it’s important that we who see through the cosy policy makers congratulating about a ‘job well done’ speak up and speak up loudly for those for whom the system is a further barrier for true individualised care because these self-same policy-makers see them as ‘too difficult’.

My title explains that the personalisation dream is dying but it isn’t dead yet. To be brought back to life, all those involved need to embrace the principles of honesty and openness and not blind themselves to their successes if they can’t see the continuing barriers.

Are Beans more valuable than People? – Or A Day at Community Care Live 2011

Yesterday I went to the C0mmunity Care Live conference. It is an annual event put on by Community Care Magazine and runs across two days. Being one of the very few free events (and excellent – free isnt the ONLY reason I go but it does help!),  I’ve always made an effort to attend on one or other of the days and try and catch up on the workshop and debate programme that is put together about a very wide range of subjects relating to social care in the UK.

I went to a few workshops and my attempts at ‘live tweeting’ were scuppered initially when a colleague from work came to sit next to me in the first session.

It was a packed session run by the Mental Health Foundation about their Dementia Choices project and the title of the session was ‘Can personalisation and direct payment support work for people with dementia?’. There was an initial presentation about the research evidence and the project that the Mental Health Foundation had put together to pilot direct payments among adults with dementia  and then there was a talk from the daughter of a service user whose direct payments had changed her life.

I was a bit disappointed though. Not with the presentation and talks – they were very good and it was obviously something that was very deeply felt by those who have direct payments working for them but, in a sense, I felt that the speaker who first received direct payments for her mother in 2003 (I think – that’s from memory but it was a good few years ago) could have made the same speech about their use about 2 or 3 years ago before the move of the more widespread personalisation agenda. Her mother had been receiving direct payments for 8 years. What was ‘different’ then with this new push towards everyone receiving a direct payment?  I refer to my previous points about us knowing that direct payments can work incredibly well if there is an involved family to provide support for the person who may lack capacity but for the isolated older person who lacks capacity there is no ‘magic wand’ to make the systems that are over-complicated seem suddenly more empowering if there is no-one to take on the support planning role.

I’ve said this before and will again that I feel currently there is a two-tier service that we are providing where those with involved families and carers may receive the more individualised support plans simply because the additional time burdens of arranging support is placed on informal carers whereas those who do not have those networks receive exactly the same services as they always do – we just call it ‘managed personal budgets’.

The workshop instilled in me a kind of despair that this group of people that I work with a lot has again been sidelined in favour of the ‘easier’ groups. Where is the research with people who have greater cognitive impairments and who don’t have family members or carers who can or who are able to manage their support plans for them? Ah, a role for the voluntary sector perhaps? The problem is that the voluntary sector is also shrinking and someone needs to pay them so that a role for ‘support planning’ is likely to mean a lower personal budget.

Still, I know I should try and be more cheerful about it. It just seems that so much of the research time spent about personal budgets has been telling us things that we already knew about research that had taken place around marginalised groups regarding direct payments.

The second session I went to was about the need for media and social workers to work more closely together. Social Workers should not be afraid of the media and the media (and by that, the panel were referring particularly to main stream media – because that’s where the battles are to be won!) – should have a chance to engage more with social workers. The usual subjects of local authorities barring their employees from speaking to the press came up and hopefully the College of Social Work will be addressing this on a broader scale.

There are a lot of inaccuracies reported and it would be good to see more social workers able to contribute to debates about the work which we do to quell some of the misunderstandings.

I then went to session on Making Personalisation Work in an era of cuts. I almost didn’t go because I thought (wrongly, as it happened) that it would irritate me and that it would be people lecturing to us again how it is the intransigence of social workers which is holding up the forward march of social care.

It wasn’t that at all and for once, it really did sound like people were actually listening to what I wanted to say about the personalisation agenda and my fears for it. There is nothing at all I would like to do more than work in a person centred way regarding care and support planning. This is something I hope that I have always been doing since I qualified though. If it can be improved, it must be and I am more than willing to change every way I have of working in order to improve it but, and this was noted by the speakers, Peter Beresford and Miranda Wixon (of Think Local Act Personal) in some ways the government’s agenda of cuts has overtaken the meaning behind the ‘personalisation’ agenda.

Unfortunately, there has been a drive to try and deliver more for less and it is not only unrealistic, it can involve pushing people into making choices that they don’t necessarily want.

Beresford made the point that the government agenda is about pushing everyone onto direct payments as the ‘preferred method’ of delivering personal budgets but, he said, crucially – ‘preferred by whom’. Well, that would be the government.

There are more ways of delivering person centred planning and person centred support than providing the cash for someone to buy their own services and while it can work incredibly well for some people, there is the very real and often ignored or side-lined issue that it is not everyone’s choice to have that choice.

The excellent concept of personalisation and putting the primary role of designing support into the hands of the user of that support and the services is being lost to the marketisation agenda.

There was a speaker on the floor, in the question time who explained that the rate of pay for carers was lower than the rate of pay for employees in Tescos – asking, ‘Do we really value cans of beans over human life?’. It makes you ponder for a while – but there are vast issues about the undervaluing of care and support staff in our culture – not just through poor pay but through poor status. Surely the ‘heroes’ of our society should be the home carers and the support workers as much if not more than the professionals whom we traditionally hold in high esteem such as doctors – who, while performing fundamental roles are at least well-compensated for it.

Another speaker spoke about an issue that I am all too aware of where choice is actually reduced for service users as in-house local authority provided services are frozen out of the provider choice that has been given to users.

Can personalisation work then, in an era of cuts? We don’t have any choice. It will because the concept is a good one although the danger is that it has been completed hijacked by a government’s cost-cutting enterprise which will end up making social care delivery so restricted that it will barely exist in all but the most extreme situations.

It is not possible to detach ‘personalisation’ from ‘the era of cuts’ as local authorities have to divest themselves of many of their functions. I see a lot of third sector organisations and possibly private sector organisations moving into the support planning and assessment verifying and supporting roles. The money (when it comes) may come from the local authorities but they will not necessarily be involved in many of the intermediate processes. It may well be that some aspects of the work are far better done in other sectors. It will become far more usual for people to pay for their own care as the eligibility criteria rise – those who can afford it anyway – those who can’t afford it may well be waiting until they meet the critical bands of need before they receive support.

There will be a two-tier system of social care support. Those who can afford to meet their own ‘moderate/substantial’ care needs according to the Fair Access to Care Services and then shift to maybe receive some support from the local authorities as their needs increase – and those who can’t afford to meet their own moderate and/or substantial needs who will deteriorate more quickly and reach the ‘critical’ band which will qualify them for support quicker at the cost of their health and independence.

I am trying to think of a positive to end on. It was good to hear some of the concerns about the pushing out of the personalisation agenda are being heard. It was good to see groups of social workers who want to be engaged in the process of change.  I got a good supply of pens and although I wasn’t able to nab a mug, I did get a frisbee!

I almost forgot too, that the announcement of the memorandum of understanding between BASW and the College of Social Work – great news. Long overdue in my view!

Personally, I enjoyed being able to catch up with some people I’ve known a long time, others I’ve come across before and some I’d only ever met in a ‘virtual’ capacity – thanks to Shirley Ayres, the team at RiPfA and of course, the Community Care team as well as others who will remain nameless!

Mental Health Action Week

Today, the Mental Health Foundation launches the Mental Health Action Week.

This year, the focus is on anxiety and fear and the impact that these can have on our daily lives and the week is to kick of the year of campaigning and awareness-raising on these issues.

There is a website and podcast that is available on the site as well as an ‘action pack’ available to send off for.  The project can be supported through (unsurprisingly) donations but also by sharing, anonymously if required, personal stories and experiences and reading those of others as an attempt (I think) to destigmatise some of these feelings.

You can even register to take part in a sponsored skydive.. if you really really want..

I think I’ll pass on that one.

World Mental Health Day

Today is World Mental Health Day with a focus on promoting positive mental  health.

Wellbeing in the East of England (perhaps not the catchiest of monikers.. ) have produced a series of short films that have been put out on television in.. yes, you guessed it, the east of England! I haven’t caught them but they are available on the website.

They also link to the Mental Health Foundation‘s list of ways to look after your mental health. There are some real gems there so it’s worth having a look through.

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The World Federation of Mental Health is focusing on Advocacy or rather, the catchy slogan ‘Making Mental Health a Global Priority – Scaling Up Services Through Citizen Advocacy and Action’ An excellent endeavour and certainly one which it worthy of support. They have published a useful booklet (pdf) which explores Mental Health issues from a global perspective as well as lots of information about advocacy and self-advocacy.

Rethink have a quiz so you can see what they would advise you to do to promote your own mental well-being (I was told to do more exercise.. !).

And on that note, MIND are having a Walk for Mental Health from Brixton to  Battersea Park today. Shame I’m going to be at work really.. for many reasons! It is actually a part of a general campaign to improve physical fitness and exercise levels in order to promote mental health.

There are lots of more local events planned throughout the UK, including an exhibition at the Institute of Psychiatry which is called Music and the Mind which carries through until 10 December and certainly seems to be worth a visit.

But whatever it is you choose to do to make the day – stay well!

Stress Relief

The Mental Health Foundation has developed and published a series of seven podcasts which are designed to, in their words

help you relax and improve your sense of wellbeing.

There are a couple of versions of each – one longer and one shorter version and they explain different relaxation and stress relieving  techniques and strategies.

I haven’t actually listened to any yet but fully intend to.

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They’re free so there isn’t really anything to lose and they can be listened to on an MP3 or the computer.

Download the podcasts here